It's not an easy topic to broach, but talking to friends and loved ones about your Crohn's symptoms can help them understand what you're going through and how they can help.

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There’s
not an etiquette book filled with pointers for living with Crohn’s disease, but there probably
should be. Crohn’s symptoms mean unusual changes in diet, weight, energy
levels, and hygiene, which can lead to awkward conversations with
well-intentioned people. If you’re struggling with ways to talk about your Crohn’s
diet, the side effects of Crohn’s medications, or other everyday
issues related to your Crohn’s disease, these icebreakers will help you know
what to say.

“Crohn’s causes me to lose
weight, but it’s not necessarily a good thing.”

When your best friend enviously exclaims that you’re
looking svelte, it’s fine to accept the compliment — just fill her in
on the reason why you’re shedding pounds, and maybe give her some “secrets”
from your Crohn’s diet, like skipping soda. During a flare-up of Crohn’s
symptoms, a serious loss of appetite often contributes to the unintentional
weight loss. Crohn’s is also associated with diarrhea and poor
absorption of protein, fats, and carbs. Chances are you’re more concerned with getting
enough nutrients than your waistline during these times. On the flip side, if
you’re taking steroids to control Crohn’s symptoms, you could be putting on
unwanted weight. Either way, you should respond to comments with:

A gracious thank-you. If the comment is meant as a compliment, feel free to
accept it.

Humor.
If appropriate, you can joke a little bit about the “Crohn’s diet” and its
impact on your figure.

Honesty.
Reinforce to friends and family that you and your doctors are making the best
choices for your long-term health, and if you lose (or gain) a little weight in
the process, that’s OK.

“I’m not a picky eater
— this is what I need to eat to control my Crohn’s disease symptoms.”

Show up at Aunt Sara’s without a healthy appetite
for all of the family favorites set out so nicely on the buffet table, and you
know you’ll catch some flack from your loving relatives. “Most people with
Crohn’s have figured out what they need to do to avoid worse symptoms,” says
gastroenterologist Brian W. Behm, MD, an assistant professor of internal medicine
at the University of Virginia School of Medicine in Charlottesville. If your family doesn’t know this, someone will
inevitably want you to “just try one little bite.” “You need a bit more variety
in your diet,” they might say. Try these strategies:

Pre-eat. If you eat foods that are part of your Crohn’s diet before you leave
home, you won’t arrive hungry. That way you can honestly tell people that you
already ate and don’t have much of an appetite but that you still want to enjoy
the company.

Bring a dish or two. Cook up some of your favorite Crohn’s-approved
recipes and bring enough to share so at least you’ll have some
“safe” food on your plate.

Reassure. People who love you may wish you’d try their fried chicken, but
underneath it all, they want you to be healthy. Say: “I’m sure your cooking is
wonderful, but I have to stick to my diet to avoid worse Crohn’s symptoms. I
just don’t want to risk feeling bad at this event.”

“Stress didn’t cause my
condition.”

“We’ve never shown that stress
plays a role in development of Crohn’s disease, but we clearly see that stress
can exacerbate the IBD [inflammatory bowel disease] in your life," says
Dr. Behm. A 2010 study published in the American Journal of
Gastroenterology found that patients with Crohn’s or ulcerative
colitis were at a greater risk of a symptom flare when feeling stressed. "It
is a vicious circle where you’re feeling poorly because of this condition that
increases the stress in your life.”

Well-meaning
loved ones may think advising you to relax a little will help your symptoms.
There is a nugget of truth in their concern: People who have Crohn’s disease
are at higher risk for depression and anxiety, Behm says, often experiencing
emotional distress that impairs their overall quality of life, according to a
2011 study published in the journal Colorectal Disease. Coping
with a chronic illness is tough, and many people receive their diagnosis in
young adulthood, becoming the first person in their peer group faced with taking
regular medications and following special diets. As a result, it may trigger
social isolation and fear of rejection, both of which add stress.
So, it’s fine to let the people who love you know that stress doesn’t cause Crohn’s, but it’s
also a good idea to listen to their concerns. Sometimes the people closest to
you can see signs of depression before you do, so consider getting an
evaluation and, if necessary, treatment. Antidepressant medication and
cognitive behavioral therapy both help.

A
good response to their concern is something like: “Well, my doctor tells me
that stress didn’t cause the Crohn’s, but living with this disease can be
stressful and sometimes depressing. Have I been doing or saying things that
make you worried about me?” Then hear them out with an open mind.

“It’s best if I know where
the nearest bathroom is.”

“For someone in the midst of a flare, it might not
be practical to go to a place without easy access to the bathrooms,” says Behm.
When the urge to go hits, you don’t have much time. As isolating as it might
feel, remember there are many people who need speedy access to a bathroom for
various reasons — pregnancy, potty training a toddler, or
incontinence, for instance.

Behm advises these strategies when family members encourage
you to join them for outings:

Check out the area
in advance. Have a
basic idea about restroom availability at any event you attend. Quietly ask
someone on staff where they are if you can’t find them on your own.

Pack spare clothing and wipes. You’ll need them in case of an accident.

Be upfront and brief. Most people won’t want all the details —
it’s enough to let them know your Crohn’s symptoms are acting up and you might
need quick access to a bathroom.

“I may be too tired to get
together sometimes, but it isn’t personal.”

Crohn’s disease can be fatiguing. That means when
friends want to go shopping or try out a new hiking trail, sometimes you may have
to pass. “It makes it hard to connect with friends when you’re having symptoms
and the friends don’t understand what you’re going through,” says Behm. Some
ways to handle this are:

Explain Crohn’s disease
symptoms or medication side effects. People close to you will understand. They care
about you, so be open with them.

Suggest an alternative. You can ask for a rain check or suggest hosting a
get-together at your place (and at your speed) when time and energy permit, or
maybe as a relaxing after-party for your pals’ more high-energy event.

Hold firm. In the face of pressure and disbelief —
expressed through comments like, “You can’t really be too tired to shop/hike/go
to the game” — hang tough. Respond with: “Well, yes, I am, and none
of us would enjoy it if I got any more worn down. Let’s get together soon, and
you can tell me all about it.” Then follow up later.

“Not tonight, honey. It’s
not you; it’s Crohn’s.”

In the midst of a flare, you may not have the
desire, or the ability, to be intimate, says Behm. Symptoms include increased
pain with intercourse, in addition to leakage or sores that make the act itself
pretty undesirable. A flare’s duration can be a little unpredictable, so Behm
recommends being as open and honest as possible with your partner about why sex isn’t on the menu.
The key here is to gauge your partner’s comfort level with details. It might be
enough just to say, “My Crohn’s symptoms are pretty bad tonight, so maybe we
can just cuddle,” while other people might need more information. If your
partner is having a particularly difficult time accepting this consequence of
Crohn’s, invite him or her to meet with your doctor to learn more.

As awkward as Crohn’s conversations may start out a
little awkward, but Behm notes that most people find their friends and loved
ones are supportive and concerned, even if what they say is sometimes a little
clumsy. Most of the time, you can’t go wrong in reassuring people that you are
doing the best you can to take care of yourself — and perhaps give
them some ideas for helping you out.

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